sophia's nicu experience

Friday, June 19, 2015

Four months ago. My baby is four months old, and I finally managed to finish typing up her NICU story. I still get so emotional and almost a defensive "that's my baby" feeling and want to scoop her up when I relive those memories.

I left off Sophia's birth story with mentioning how she was taken to the NICU. We were blessed that her stay there was only for four days and that it was for precautionary reasons (which ended up all being justified when we found out she does have Long QT Syndrome). There were definitely babies in there that actually need the specialized care from the NICU, and we were continually reminding each other, "It could be worse."

Honestly, those four days were a sort of blur. We got into a routine and everything seemed to mesh together. My recollection of it was much more emotion-based rather than event-based like her birth was. I still want to document it though, so that both she and I can look back at it someday. I'm so proud of how well she did with the whole experience, she was such a brave little trooper when I was not.

And, I still cry reliving this whole experience.


Friday, February 20th, sometime around noon - Her EKG had come back irregular and her heart rate was lower than normal. The children's cardiologist called the children's electrophysiologist to determine if she should be put in the NICU or not. The reason all the doctors continued to call the children's electrophysiologist is because he specializes in cardiac care that is electrical with the heart, which Long QT is. This specific doctor is one of the best in Las Vegas (if not the best) when it comes to electrophysiology and caring for children. I met with him once during my pregnancy, was pleased with him, and liked knowing that while multiple doctors examined her, they all called him to make the final decision.

When the children's cardiologist came into our room to tell us that the children's electro made the decision to put her in the NICU, I just clutched her. I remember we asked him a couple of questions and then I asked how long she'd be there for. He sort of laughed, annoyed because I'd already asked him this before he called the children's electro, and said he had no idea. It all depended on her. He told us that they would come get her when a bed downstairs opened up.

That was the nice thing about this setup, I guess you could say. The NICU was just one floor below us, so it made getting there to see her relatively easy.

As soon as the doctor left, I handed Sophia to Austen and tried to scarf down lunch. I knew I needed to eat so that I could heal, plus I was still so hungry after not eating for 30+ hours the day before. I called my mom and told her, and started to cry. She told me to call a family friend who is a NICU nurse in St. Louis, just to get her opinion and hear what to expect. I was so unprepared and overwhelmed. Just thinking about it makes me cry, still. Being able to talk to our family friend, Kim, was such a blessing. I asked her at one point what to expect, and had started to cry. I knew we had no choice, as badly as I didn't want this. As she was telling me about the NICU, a nurse came in saying they were here to get Sophia. I had to quickly end our phone call, and cried as she told me something about as a friend and a NICU nurse...and that she loved me.

I told the nurse I wanted to go, too. She wheeled Sophia in her bassinet and Austen was helping me. I think they asked if I wanted a wheelchair, and I said no, I was supposed to be up walking. Had I known now what was all about to happen, I would have said yes. The nurse was talking a mile a minute and I remember her remarks feeling cold and inconsiderate. She wasn't rude, just seemed to have no idea about the emotions we were feeling. She also walked much too fast for me to keep up with and seemed annoyed with how slow I was walking. I was hunched over, pushing my IV stand and using it to help support me, while also holding my catheter tube. Lovely, right? I'm pretty sure the whole time, Austen had his hand on my low back trying to make sure I was okay and that I could handle the physical-ness of walking and trying to keep up.

We went down to the NICU and they explained how there's different pods, and each pod is specializing in something. I think there were seven pods total. Sophia was in pod four, the cardiac ward. As she brought us in, she was explaining how we would get in to see her, which I remember thinking, 'There's no way I'm going to remember any of this.' They brought her to her little bed area and got me a seat. Immediately, there were about five different nurses around her, moving her from her little bassinet to their warmer bed. They took the blanket off and one nurse made a comment when she saw she had only a diaper on, "Oh, no wonder she's crying, she's cold." All I could think was, 'I'm not a bad mom! The nurses upstairs told me to just wrap her in the blanket and leave her little shirt off because we were doing skin-to-skin nursing so often!' One of the NICU doctors came to ask me how much breast milk I was producing. I said I had no idea, but that I nursed her around 3:00am for 45 minutes and had tried nursing her again for about 10 minutes just before her EKG. She said we had two choices: we could give her an IV for fluids, or we could supplement with formula. I told them I really wanted her to have breast milk, and they said I would need to be pumping and they would give her that first. However, if I wasn't producing enough, she needed something else. I asked if I could try pumping first and then make a decision.

It's like those were magic words and before my baby is even completely settled in her little NICU cove, someone got a bag of pumping supplies and they said they'd show me where the private nursing rooms were to pump in. Go figure, the room for pod four was occupied, so I'd need to use a different pod's room. Austen went with me, and we're being walked all over the NICU (okay, not all over, but it certainly felt that way!). She was very sweet and showed me how to use the pump, then left us alone. In 30+ minutes, I had a couple of mL of colostrum. I was almost in tears. When the nurse came back and I showed her, Austen was very blunt and asked, "I know you can't recommend an IV or formula, but off the record, what do you recommend?" The nurse sort of made a face and said, "All I can say is the IV is just sugar water, while the formula has protein and other things she needs." We made the decision to supplement with formula.

The nurse told us that my OB/GYN was upstairs wanting to know where I was. He had gone by my room and I wasn't there, and was pretty mad when he found out that his patient's newborn was in the NICU and she was downstairs, too. Nobody notified him. We were told to go back upstairs so I could see him. By this point, I was hurting pretty badly. I had just walked too much and my body was not prepared for this much activity 12 hours after surgery. Once we got out of the elevator on the postpartum floor, I started to bleed down my leg again. Austen went to the front desk to ask for paper towels and I just stood there against the wall fighting back tears. I was overwhelmed, I was hurting, and I was embarrassed.

Our room was right across from the nursery. There were people standing outside of the glass looking in at the babies, oohing and ahhing. I was fighting back tears with everything I had. They were all so happy, and an hour ago, I had been, too. But my baby wasn't with me anymore, and I was angry because it just wasn't fair.

As soon as we got in the room, I went straight into the bathroom. Austen followed me in and pulled me close, and I started to sob. They were those big sorts of sobs that go way deep into you, because you just don't have the strength. He cried with me for a minute, and then someone knocked at the door. I think it was our NICU nurse, and I didn't even really care that she could hear me crying. She had brought up a card with Sophia's bed number and access code to get into the NICU ward. He left me to get cleaned up and I heard my doctor come in. He was talking with Austen about what was going on with the NICU and I kept telling myself to pull it together, just for a minute. I walked out and the look on my doctor's face just got me. He was so compassionate and looked at me like, "Oh, you poor, sweet thing." All he asked was how I was doing and I lost it all over again. Austen helped me into bed as my OB/GYN talked to me about how yes, I needed to be going downstairs to see her, but I also needed to take care of myself. He told me I was doing fantastic and that this was the best possible place for her. I just kept nodding, because I couldn't talk as I was trying too hard to fight the sobs from coming back. Tears were okay, sobs were not at this point.

Of all things, as I was getting into bed, my catheter tube was stuck on one of the bed levers. Austen noticed and was trying to get me to stop getting into bed, but I didn't realize he was trying to untangle me. I kept yanking forward to get in bed, he kept yanking backwards to get me untangled, and a the while my doctor is talking to me about healing. Finally, Austen just grabbed my leg, held me still, and untangled me before putting me in bed himself. A day or so later, we were talking about it and he said he could just picture me ripping the tube and my pee spilling everywhere, because that was just what I needed at that moment. It's one of those things we can look back at on the experience and laugh about. There aren't a whole lot of those.

Right after my OB/GYN left, Austen climbed into bed with me and we just held onto each other and cried.

Shortly thereafter, my nurse came in for meds, or something. I really wasn't super fond of her, and as she's asking what's going on with the NICU, she had too many opinions for me. She also didn't seem to be very sensitive to our emotions, either. My mom came in then, and when she asked how we were, Austen left the chair to go fumble around at the sink because he was emotional about it all. At the same time as the nurse is in there and my mom had just come in, another nurse came in with a Nothing Bundt cake saying something about this is for us to celebrate her first birthday in a tone that was much too cheery. I smiled, wanting to yell at her about coming in with a cake for my baby when couldn't she see my baby wasn't there?! Quit bringing me cake, just bring back my baby. My mom then said she had a little push present for me. I about lost it again, because here was something else for me since I had a baby, when my baby wasn't there. It was a necklace with a small stone in the center that you can put a drop of essential oil on so that it's right by you. Really, it was so sweet of my momma.

It had been maybe an hour since Sophia was taken to the NICU, and the three of us were finally left alone. We were talking and I was getting all worked up again. My mom asked Austen if he would take her down to the NICU to see her, that way I could get some sleep. I remember feeling so torn. All I wanted was to see my baby, but I knew if I went down to the NICU, I would just bawl my eyes out seeing her hooked up to all the monitors, knowing I couldn't just bring her back upstairs with me. I started to cry uncontrollably and my mom didn't even ask questions. She went and got my Young Living peace & calming oil and started to put it all over me. She put it on my neck, then on my wrists, then on the soles of my feet. She and Austen kissed me, then told me to get some sleep as they left. I let myself sob for a couple of minutes, and then exhaustion took over.

A little bit later, Austen came in and woke me up just a little bit. He told me it was a good thing she was in the NICU because she was having problems eating. He said something about how she didn't know how to eat and breathe at the same time, which is probably why I had a difficult time nursing her after that first initial feeding. He told me my mom was still downstairs but he was going to run home to take care of the dogs.

At some point after that, I woke up just enough to hear my mom arguing with my nurse. This nurse bugged me a lot. She asked questions about what was going on in the NICU and as my mom explained in, she had too many opinions. My mom was explaining Long QT and how this is all precautionary, but the nurse was judgmental and acting like she knew much more about our condition than she actually did. I wanted to high five my mom and b****-slap my nurse. Seriously, the emotions, ya'll.

Four hours after I first fell asleep, I woke up. I felt better, much more sane and in control of my emotions. I ate dinner and then we went downstairs to see Sophia. I was able to change her, feed her, and just hold her.

That night, we decided to focus on sleep and rest more than pumping (I was pumping every 3 hours, and it was still so little). Kim, our family friend NICU nurse, had recommended I skip a feeding and let myself get a good 5-6 hours of consecutive sleep. She had reminded me I just had surgery and needed to let my body heal, too. So that's what we did.

Saturday and Sunday sort of blurred together. Since 7:00-8:00 was shift change every 12 hours, we would go down just after 8:00am to change her, take her temperature (NICU babies can't be bottle fed if they can't regulate their body temperature), feed her, and then cuddle her for about an hour before going back upstairs to rest, pump, and repeat.

What we do remember is our day nurse for those two days was not pleasant. She was downright rude and condescending. My mom began to repeat, "Teach me, don't scold me," because everything we did was met with a scolding. It's intimidating enough to change a tiny, 6lb baby's diaper but it's downright scary to do so when that little baby is hooked up to several different cords. There were a lot of negative moments, so much so that we began to tease whoever was heading down to the NICU, "Good luck! Don't get yelled at by ___." Unfortunately, almost every time we went to see sweet Sophia, we were scolded for something or another.

The second day, we did feel a lot better emotionally. I felt like I had a better handle on the situation and that I could process information more clearly. The inconvenience was that I was still being pumped with about 4 liters of fluids a day, so sitting to feed Sophia and hold her, my feet and ankles would swell. I'm not talking a little swelling either, no no, we're talking like elephant feet. Austen brought me some of his flip flops from home, and even those would leave marks on the top of my feet from where I had swelled up into them. While I would rest upstairs, it was basically a race to get the fluids to dissipate just in time to go back downstairs for them to swell again. It was also really uncomfortable, so I was thankful when my night nurse took me off the IV and catheter at the beginning of my second night in postpartum. She was fantastic.

and this is when they weren't too swollen...they'd get about twice as big!

Monday was a big day for us. Early every morning they would take an EKG on Sophia, and a children's cardiologist would review it. But Monday, we would actually get to meet with her children's electrophysiologist, whom I had previously met with while pregnant. He would get to say whether Sophia could come home or not. I was also being discharged later that day, so we were really hoping for good news! We knew her EKGs had been looking better, so we were really hopeful. We literally sat around and waited all morning until our nurse (who was much nicer this day) called and said he would be there around 11am. We went back upstairs to rest, and I was so antsy to get to the NICU that we left a few minutes earlier than we'd planned. He was already there. He was so kind and waiting for us by her crib side! I had notes ready, as did my mom, and we sat in her little crib area discussing her EKGs, meds, and options for preventative treatment.

Then the moment came of asking the one question I had been asking since Friday: when can she go home? Can she come home today with us?

He looked at her charts again, and then said, "Everything looks fantastic. I don't see why she couldn't go home today."

We all let out a huge sigh of relief. I think we even asked him if he was serious. While he went to discuss everything with her NICU doctor, we all hugged and I gave her a little squeeze as I said, "You're coming home with us today."

But a part of me felt hesitant. I remember saying to my mom that I would feel better once I saw the discharge papers. Looking back, it was wise of me to not share with the couple of friends who knew she was in the NICU what the doctor had said, because it wasn't that easy.

A couple of hours later, we had staff from the children's heart center come to do the blood work for genetic testing for Long QT Syndrome. Austen was on the phone with someone from a foundation to get an AED rented to us, so he was away from her crib. The sweet lady from the heart center kept saying, "Mom, are you sure you want to stay? She's going to scream pretty loud. Most parents don't like to stay around for this." I kept assuring them I'd be fine. Sophia whimpered once, but didn't scream. I got up from the chair and saw that the IV was not in her hand or arm, but in her head. When Austen came back over, he said, "How's she doing?" because he couldn't see her since the nurse was blocking his view, and I simply said, "Good. The IV is in her head." He went over to her and rubbed her hand while the nurse finished and the sweet lady on staff told me that was why she asked if I wanted to leave, that most parents don't handle that well. They were all so impressed with how well she handled the IV, most babies don't take it so well!

We were feeling really good about everything, and headed back up to my postpartum room to start packing up the car. When Austen turned the corner from the elevators and saw the front desk, the nurses were all waiting and asked what they said. He said, "SHE'S GOING HOME!" and they all cheered. I melted. They were seriously the best. But for some reason, I just couldn't text people telling them we were coming home yet. I did text a friend of ours who wanted to bring over dinner. I just couldn't believe it until I saw her discharge papers.

Then, my hospital room phone rang. Austen answered. It was a doctor from the NICU who was going on and on about something, and then I overheard the words, "She's not going home today." Austen told her to hold on, that we'd be down in a minute to talk. She tried to tell him that wouldn't be necessary, but he said we would all be down. My heart sank. I was shaking. I was so mad. I remember getting ready in a flurry and heading downstairs with Austen and my mom.

We got to her crib and there was the NICU doctor that we hadn't met, her nurse, and a patient advocate. The doctor explained to us that she hadn't gained weight in the past day so she couldn't be discharged. We argued with her about it. How had she not gained weight? She was eating beyond her minimum requirement every feeding. Since when did her weight matter?? We had all remained very mild with the staff up until this point. I (who hates confrontation) finally told the lady that no one had informed of us this, that no one communicated anything to us. It made the doctor uncomfortable, and she apologized for it but then said, "Let me put it this way, I am not comfortable discharging her. I will not sign her discharge paperwork." End of discussion, in her eyes. You could cut the tension with a knife. We were exhausted of the NICU. Austen sat down in a chair next to her crib and said, "Katie, you go home with your mom. Get some sleep. I'll stay here with Sophia tonight. I'm not leaving until she's coming home." That set them off. Austen's take on it was he was just not leaving his newborn in the NICU and going home without one of us being there with her. My mom and I said it was like he went on strike. If my baby isn't going home, neither am I. The nurse made a phone call and said there was a room available to NICU parents, where they can room-in with their baby for the night. It was available for tonight, so since chances were high she would be discharged tomorrow but I was already discharged, we could stay one more night with her at the hospital. At least I didn't have to go home without my baby. I wasn't strong enough to do that.

I asked what I could do to make sure she gained weight. At this point, the patient advocate got all excited. Apparently, she was formerly a lactation specialist. She got all detailed into breast milk and nutrition (which we found very ironic because she was borderline obese). She was telling me to make sure I was healthy and sort of giving me the up-down, to which my mom butted in very quickly and told her we were extremely healthy and putting nothing but the best into our bodies. When she was done with her soapbox of breastfeeding, she looked at the nurse and said, "Ooh! This is like the happiest day of my life! I just love sharing about breastfeeding." Again, I wanted to b****-slap this woman. The happiest day of your life? Really? Because you just told me my baby can't come home. Some patient advocate.

We went back upstairs and my nurses were the sweetest. They told me all of my discharge paperwork was done, but I didn't need to leave until 11:00pm. They told me to rest, eat, and hangout until after shift change when we could get into the NICU room-in. I sat upstairs and while I pumped, my mom said she knew I was upset. I told her no, I had been upset for 3 days. Now, I was downright pissed off.

We got everything together that we needed for the night and went down to the NICU, thanking our nurses in postpartum for how fantastic they'd been. Sophia's night nurse had been with her before, and was this young, sweet girl in her 20s. She got us settled in, explained how room-in would work, and said if we needed anything to call and let her know.

Toughest night ever.

For the first three hours, Sophia's oxygen monitor wasn't set to the right setting, so the alarm went off every minute. I'm not being dramatic, either. Austen slept on the couch while I was in the hospital bed with her bassinet pulled right up next to me, and her monitor facing me so that the lights didn't shine towards him. I did her routine of temperature, diaper change, and feed. The nurse came in, fixed her settings, and then left. We were trying to get Sophia to eat as much as she could in hopes of gaining enough weight to go home. What we didn't know was her weight was taken at shift change, and that was the number they were going off of. That babe ate like a champ, so the point she probably had a little tummy ache. Around 2:00am, I hadn't slept but maybe 30 minutes to an hour, and Austen was waking up. He told me to get some sleep, that he'd hold her. He held her for 3 hours since she cried whenever he tried to put her down, all so I could sleep a little. When I woke up, he was telling stories with her about all the things he was going to teach her and making up silly songs. I melted.

Shortly after 8:00am, our nurse from yesterday came in. It was a relief to see her and not someone new. We asked if she had any news and she said yes, we were going to start the discharge process! We had to watch an infant CPR video, sign all her discharge paperwork, and get her beta blockers from the pharmacy.

We had started the CPR video when the patient advocate from yesterday came by. I really didn't want to talk with her, and after a couple of minutes at the door, Austen mentioned we had the infant CPR video on (it was unable to be paused) and he asked if she wanted to come in. She did, and then sat there making comments about, "Oh, you're Polish! What words do you know? My family is from Eastern Europe, here's all the words I can say." Then she lectured me about my health insurance, because I had coverage with both Austen's, my parents, and had a plan with my teacher insurance simply for their life insurance policy. When she found out Austen wasn't going to stay in the military for a career, she got real catty. She went on and on about how her son wanted nothing more than to join, but couldn't for health reasons. He mentioned how he was going to college, and she said something about how she's so glad she pays for his college and he won't even stay in the military. I wanted to b****-slap her for a second time in 24 hours. Ya'll, I was exhausted, hungry, and needed coffee like you cannot imagine. We're lucky I didn't reach across my bed and actually slap her, or kick her out of our room at the very least. When my mom got there shortly thereafter, she was shocked and applauded our self control and professionalism.

Fast forward to almost 4:00pm, and our nurse finally came in carrying beta blockers and discharge paperwork. We had some issues with getting her beta blockers, so we were so thankful when those came! They were all we were waiting on, all. day. long. I signed my name countless times and listened to all about how to care for your child and not kill her. This whole time, Austen took our bags to the car, and then our nurse took Sophia's cords off. I was able to put in her a going home outfit, and we snapped a couple of pictures in the hospital before we left. We looked like death warmed over, but I was just so happy to get out of there! Austen & I left with Sophia, and my mom stayed to go over notes about our NICU experience, and report some of the poor treatment we had, to the NICU director and charge nurse. Over the next month, both Austen & I spoke with both the charge nurse and director again, giving them detailed reports of what happened in hopes of it not happening to other NICU parents, and our recommendations of how NICU care can be better for both the child and parents. Basically, communication.

Coming home with Sophia was the best feeling for me. I know many NICU moms go home empty handed for the first time. I just couldn't. I wanted my baby with me. Nothing had gone according to plan for my labor, delivery, or recovery. I wanted one thing to go according to plan: going home. Thankfully for us, we were able to all go home together for the first time with a healthy, happy four day old babe.

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